On the Right Road

It’s hard to believe, but it’s almost been three months since Becky received her new liver and kidney. She had four appointments in Dallas on Thursday. All indications are that she's on the right road. Even though some days are still a little tougher than others, we seem to be on a good trajectory overall.

The last couple weeks haven't been without bumps. A couple days after our Christmas celebration, Becky started feeling like she had allergies or a cold or something. By Thursday of last week, we were getting in touch with her liver team coordinator to determine next steps. They suggested starting with a trip to the doctor to test for flu and COVID. Both tests came back negative. However, by the weekend, she was feeling worse. Another phone call. This time we headed to the emergency room to run more tests.

After six or seven hours in the ER, and the ER doctor consulting with Becky's liver team, the conclusion was that it was most likely just a cold. It just hits harder and takes longer to fight off because she's on immunosuppressants. It's still hanging around but there are signs she's getting a little better. It's a not-so-pleasant reminder that she'll need to be extra cautious when around others - like at her physical therapy sessions. They did give her another unit of blood while at the ER since her hemoglobin levels have been trending down.

On the other hand, the appointments in Dallas were encouraging. The doctor said she looked great. She's gaining a little weight - which means she's rebuilding some muscle mass. Most of the lab numbers looked good. She's obviously stronger. The best indication to me was that this was Becky's first visit to UTSW that she did not need a walker or wheelchair for the entire visit. She was a little tired at the end of the day, but she made it.

I said most of the lab numbers looked good because her hemoglobin is still a little lower than they would like and so are some of her iron numbers. So we're trying to figure out the logistics of a new injection every week without having to make a weekly trip to Dallas.

Bottom line, the doctors were very encouraging. Becky made it through the first three months with no major complications. Once we hit six months, they'll start tapering off some meds. It may be a year before she feels back to normal, but we're headed in the right direction. Oh, I almost forgot. Becky looked good enough and healthy enough that the team was willing to remove the feeding tube and give her a week or two trial period to see if she can regain her appetite and start eating. We've started an HEB list!

As always, thanks again for the prayers. The support has been awesome.

Merry Christmas!

You're probably thinking I'm a little late. Christmas was several weeks ago, right? Well, you may remember that we were still in the middle of our extended retreat in Dallas over the holidays. Our kids were kind enough to put our Christmas tree up before we came home, and as we settled in to our new routine, we picked a date for our family Christmas celebration. That date was yesterday. We had Christmas and exchanged presents with our kids and grandkids. Then some more of Becky's family joined us for a "Christmas" dinner. And a good time was had by all!

As far as recovery goes, we're still on that road. Progress continues. Becky's biggest challenge is still her nausea and lack of appetite. Although both seem slightly better on most days, the progress on that front is slow. She is getting stronger and more steady on her feet though, so that's a big plus.

It was also my first week back in the office at work since October. I wasn't able to get in a full 40 hours, but Becky and I are both making adjustments. We're also getting a little help with transportation. The road has not been easy and we don't expect the rest of the journey be short, but we feel like we're still headed in the right direction.

Thanks again to everyone for your continued support and prayers! They are felt and appreciated! 

We're home! (again)

Well, we're back home. The doctors didn't find any underlying medical problems that would be causing Becky's nausea and weight loss. In fact, one of the doctors said that given how sick she was before and even after the transplant, she looked better than he expected and is near what he would consider best case scenario in terms of progress at this point. He added that we still a long road ahead given the toll on her body over the past few months, but he was encouraged and encouraging.

They changed a few medications and are trying a different formula for Becky's nutrition, and after a couple days at UTSW her nausea seems better. The lack of solid foods and all the various medications combined with her historically sensitive GI system make it almost impossible for her stomach to feel normal right now. So, I wouldn't say she's 100%, but at least she hasn't been throwing up (sorry for graphic mental picture).

There's really not much else to update. Becky's slowly getting stronger although she's still tired. She's trying to find things she can eat so we can get rid of the Dobhoff feeding tube, but she still doesn't have much of an appetite and most things still don't taste good to her. But on the plus side, she did eat a couple bites of waffle for lunch, and about a half scoop of Braum's ice cream on the way home. We're still working on the logistics of home care and transportation so I can return to the office.

That's about it. Overall, she's much more herself than she was a couple months ago. Feel free to call or text her (she doesn't do Facebook Messenger). Afternoons or evenings are probably better than mornings.

Thanks again for all the support and prayers as we continue the journey.